Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Ema

cmc811

Recommended Posts

cmc811 Apprentice
cmc811
Posted

Correct me if I'm wrong but my understanding is that EMA is highly specific, but not super sensitive. Is that correct?

 

Reason for asking is my son had a negative tTg-IgA (sufficient total IgA) and I asked about the DGP but the doctor ordered EMA. The tTg seems to be more sensitive than EMA so if that came back negative is there really any chance of the EMA being positive.

 

I really liked this new doctor we saw and he seemed super knowledgeable but I'm confused by his choice of tests.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


StephanieL Enthusiast
StephanieL
Posted

"The anti-endomysial antibody test (EMAIgA), EMA-IgA, is very specific for celiac disease. It’s estimated that a person with an elevated titer of EMA is almost assured of having celiac disease. However, the EMA test isn’t as sensitive as the tTG-IgA test; about 5-10% of celiacs do not have a positive EMA test."

cmc811 Apprentice
cmc811
Posted
  • Author

"The anti-endomysial antibody test (EMAIgA), EMA-IgA, is very specific for celiac disease. It’s estimated that a person with an elevated titer of EMA is almost assured of having celiac disease. However, the EMA test isn’t as sensitive as the tTG-IgA test; about 5-10% of celiacs do not have a positive EMA test."

So, how likely is it for the EMA to be positive if the ttg was negative?

GottaSki Mentor
GottaSki
Posted

So, how likely is it for the EMA to be positive if the ttg was negative?

 

Not likely, but it is good to have it run.  Is it at all possible that he ordered it by mistake?  My primary ordered my annual celiac antibody panel at my direction so I'd have them ready for my celiac doc appt and she accidentally ordered AGAs instead of the DGPs I had asked for because she clicked the wrong box in the lab order system.  Wasn't a big deal for me....but during the process of diagnosis in children, not running DGPs is a mistake in my opinion.

 

If the EMA is positive there is celiac damage to the endomysial layer of the small intestine.  

 

The reason the DGP is so important...especially in young kids is it measures possible reaction to gluten - potentially before damage to the small intestine is measurable.  It can also help determine if small quantities of gluten still remain in the diet of folks that have been diagnosed.

cmc811 Apprentice
cmc811
Posted
  • Author

Wasn't a big deal for me....but during the process of diagnosis in children, not running DGPs is a mistake in my opinion.

 

If the EMA is positive there is celiac damage to the endomysial layer of the small intestine.  

 

The reason the DGP is so important...especially in young kids is it measures possible reaction to gluten - potentially before damage to the small intestine is measurable.  It can also help determine if small quantities of gluten still remain in the diet of folks that have been diagnosed.

I don't know what the deal with the DGP is around here, but no one seems to think it has any value. When I asked about it he didn't really address it specifically. I told him that the pediatrician wouldn't order it because she said no one would know how to interpret the result. He looked puzzled by that and said no, that isn't true, but then he didn't order it either.....grrrr!

 

He was very explanatory with everything else but he was a little vague when it came to that test and I just wish I knew why. I will try and call today but don't know how far I will get with that...

GottaSki Mentor
GottaSki
Posted

I don't know what the deal with the DGP is around here, but no one seems to think it has any value. When I asked about it he didn't really address it specifically. I told him that the pediatrician wouldn't order it because she said no one would know how to interpret the result. He looked puzzled by that and said no, that isn't true, but then he didn't order it either.....grrrr!

 

He was very explanatory with everything else but he was a little vague when it came to that test and I just wish I knew why. I will try and call today but don't know how far I will get with that...

 

Is it possible it just got left off the order?  

 

That is strange...hoping it was just a minor error and his staff can fix it.

cmc811 Apprentice
cmc811
Posted
  • Author

Is it possible it just got left off the order?  

 

That is strange...hoping it was just a minor error and his staff can fix it.

I guess it's possible but in the whole visit that was the one topic that I felt got the brush off a bit. I'll see what I can find out today but I have some work meetings so I don't know how much time I will have to deal with it. How long after a blood draw can an order be put in and the same blood used? My son does not tolerate blood draws very well and I would hate to have to make him do it again because of a mistake :(

 

I have a message in so we'll see if I hear back today.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Gemini Experienced
Gemini
Posted

DGP is a newer test so maybe many docs aren't up to snuff on it?  It's a wonder anyone is diagnosed, with all the confusion surrounding testing and general knowledge of Celiac! 

Geez....... <_<

nvsmom Community Regular
nvsmom
Posted

DGP is a newer test so maybe many docs aren't up to snuff on it?  It's a wonder anyone is diagnosed, with all the confusion surrounding testing and general knowledge of Celiac! 

Geez....... <_<

So true. None of my doctors ave heard of the DGP tests, and I don't think it is available here.... This is a city of over a million so you would think someone would spread the word.

GottaSki Mentor
GottaSki
Posted

So true. None of my doctors ave heard of the DGP tests, and I don't think it is available here.... This is a city of over a million so you would think someone would spread the word.

 

Very frustrating....it was new the year I was diagnosed -- very, very frustrating that it is not yet available everywhere (five years later).

 

Perhaps I should go back to suggesting AGAs -- unless the DGP is available.

 

Sorry to stop the flow of your thread CMC....carry on :)

cmc811 Apprentice
cmc811
Posted
  • Author

Sorry to stop the flow of your thread CMC....carry on :)

 

No worries!

 

It is frustrating that I can provide link after link to studies and they all say that DGP isn't better than tTg, but the 2 used together seem to yield the most accurate results, yet I can't get the test ordered.

 

I haven't given up on this GI yet, since I don't have his explanation yet. I left a message for him and didn't hear back today but since I'm new to this office I'm not sure if he works everyday or what his usual response time is. Holding out hope that I'll hear something tomorrow.

 

Also, I have a dentist appt for my 3 yr old tomorrow to get a better analysis of his enamel. The GI was VERY interested in his enamel issues and wanted more info from the dentist. Ironically this is the same child that vomited violently today with no other symptoms. So odd! We really have low suspicions in him compared to the 5 yr old but his belly has seemed more bloated the last week or so and now random vomiting......I'm beginning to feel like I'm looking for symptoms, but they just keep popping up.

 

So, anyway, I'll be calling the GI office again tomorrow to relay information from the dentist and to see if I should make an appt for the younger one. Like I said, he wasn't at the appt with us but the doctor seemed very interested in following up with him due to his teeth issues we mentioned. Hopefully with that call I can also find out about the DGP for the 5 yr old. I am just so ready to get to the bottom of all this. I'm actually using 2 weeks of vacation time so I have time to make appts, make follow up calls, etc and to clean the gluten out of my house.

tri-gal Rookie
tri-gal
Posted

It really seems that the medical community is confused by the lab tests available, how they differ and what to order and when.

I faced this exact issue yesterday with doc not being even aware of DGP or if it is available, so I  pointed to it in hard copy report of world gastro report that someone posted the other day (THANK YOU). I said it is supposed to be better for kids, mutter, mutter and she scribbled it on the lab form. But she also scribbled TGA (which I think was a mistake as she was  saying tTG outloud). I think the non-specialists don't really know. Hardly blame them. I think if the celiac medical community or labs could create more consistent terminology, labelling, and a simple fact sheet, it could help us all.

Okay, rant over. Here is what I think people are saying is best for kids in your (and my) situation:

 

1.total serum IgA (as a baseline to check for deficiencies in making that type of antibody

2. IgA tTG (as highly specific test, but noting it can be negative in kids or in IgA deficient folks,therefore, more on the list...)

3. IgA DGP (more sensitive than tTG and also very specific, but again, requires person to be producing IgA so continue on...)

4. IgG DGP quite sensitive and very specific, performs well in kids, and good test particularly for people with low IgA production ability)

 

there is also the EMA that you mentioned, but I gather while highly specific it takes extensive damage to show as positive, so limited value in some people who actually have celiac disease.

Please correct me if I'm wrong on the above. I defer to others but this is what I understand.

(I may cross -post this stuff later under "how long to gluten my daughter" as I'm really trying to figure this out too.  Our doc did not write down IgA DGP, so  I may just have to ask the lab to do it as I'm sure it was just an oversight. Besides, I have to pay with my pocket, not covered in my province so why do they care what I ask for).

good luck. I hope you get the tests you need.

tri-gal Rookie
tri-gal
Posted

oh yah, And coming back to the EMA question, I really don't know if it is redundant with the tTG or if some people could show EMA without being picked up on the tTG. I wonder if someone knows the answer to this, because that would suggest: may as well do them all if you have an at risk patient or a reasonable suspicion of celiac disease.

nvsmom Community Regular
nvsmom
Posted

The EMA IgA is rarely positive if the tTG IgA is not.  The EMA tends to become positive after the tTG IgA has damage to the villi. Then the body makes EMA and wipes out the top layer of damaged villi in a big autoimmune over reaction.... That's a bit simplified but basically how it works. That's why many labs (like mine) only run the EMA IgA AFTER a positive tTG IgA has been found. In my city to test for celiac disease, you only get a tTG IgA (and serum IgA) ordered and then if you fail that they will order the EMA.  No other options were available to me.

cmc811 Apprentice
cmc811
Posted
  • Author

Still no word on getting the DGP added, which is irritating since I left the message on Tuesday.....grrr!

 

Anyway, CRP and Lipase were normal but still waiting on TSH and EMA and possibly DGP if it was added but that is doubtful. I got the CRP and Lipase results through a mychart online access but typically abnormal results aren't posted there until after the doctor has contacted you. Wonder if the TSH isn't done yet or the result is hung up because it was out of range....looks like I need to call and check up on that tomorrow.

cmc811 Apprentice
cmc811
Posted
  • Author

Is it possible it just got left off the order?  

 

That is strange...hoping it was just a minor error and his staff can fix it.

 

So finally heard back from the Doctor and no, it wasn't a mistake. He uses EMA and TTG. :(

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,669
    • Most Online (within 30 mins)
      7,748
    CDR40
    Newest Member
    CDR40
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Medication

      By Scott Adams · Posted

      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.